SEPTEMBER 2008 rads group

roberta37

Thanks Lauren - that really helps to know what to expect and what expectations to have energy wise.

I thought I was getting my simulation set up for this Tuesday but it ended up being the wrong cancer clinic.  I had a choice of two and one was closer to work so that is the one I wanted to go to.  The other one is about 45 minutes in the opposite direction and would have made going to work difficult.  It is a brand new facility so that would have been nice.

So I sit and wait again for a phone call. 

Anonymous

Hi Lauren - I'm glad you will be finished soon. Thanks for sharing your experiences. I'm worried about feeling tired - working all day and then my long drives for tx.

That's a shame Roberta37- but closer to work was the only way to go.

HeatherBLocklear

Hi Nancy, hi all --

I'm starting end of September, beginning of October. Already met with the radiologist (a female doc), but didn't have any type of walk-through. I suspect that when I go in for my first session, they'll simply fire up the machines and cook me. I do need reassurance, however. What's it like? What do we all need to watch out for?

Hugs to all,

Annie Camel Lung

Lauren -- just read your post and want to thank you.

Estepp

Hi Ladies, do any of you have expanders or implants in now as you are starting rads...?

TY

Laura

NancyD

HEY Annie, glad to see you in the group!  Do camels glow in the dark?

The first meeting is usually just a talk. I was very suprised when they had the time to take me through the CT simulation and tattooing, but I guess they thought they might be able to start me earlier. I believe my first day, Tuesday, will be longer than the subsequent ones. Whatever they need to do to finish setting up will be done then, and the first dose will be administered.

It's also my daughter's first day back to school--her senior year. We're going to have a very interesting dinner table conversation.

Laura, I don't have expanders or implants...I'm going to look into DIEP recon after my rads are done. I didn't have enough time between surgery and rads to consider expanders.From everything I read, I wouldn't have time to get enough fills in, and radiated muscle/skin may not stretch well. So I opted to just have a bilat mx with some skin sparing. Then the PS can use what he needs/what will work from both areas, tummy and breast.

Boo307

Hello ladies,

I'm also just started radiation.  I had my first two treatments last week and now have a three day holiday.  I have bilateral treatments, so twice the adventure.  So far so good, although after my first treatment, my left nipple has been more sensitive since the sentinel node biopsy/lumpectomy/re-excision.  Immediately after being zapped, I felt a twinge.  Not a good start.  I expected to have no effects for a couple weeks.  I was told all I could use was 100% Aloe Vera and Aquaphor and they are so soothing.

I found some great cotton jersey sports bras at Wal-Mart, 3/$9.88.  I bought two sizes larger than normal and they are so comfortable.  Cotton covers the elastic and fabric covers the mammary fold, so no skin on skin.  It's great to have a a fresh one to change into if it gets sweaty and damp.   It is great to have bras that I don't care about getting greasy with the Aquaphor.

Hope you are all have a good Labor Day weekend.

Betsy

Dx 3-18-08 Left IDC,1.8 cm Stage, 1 Grade 3, node 0/1, ER-/PR-/HER2+ -  Right DCIS  ER+/PR-

Bilateral partial mastectomy - Chemo TC x4 - Herceptin 1 year - Radiation Tx 33

redheadace1

Hi, everyone. I'm supposed to start Tuesday, or maybe that's when I'll get my tattoos, since so far they've only done the CAT scan and the Sharpie marks! I'll be so glad to have some company. I have a cold right now, and I'm hoping that won't delay things; I'm ready to get this show on the road. Good luck to us all!

NancyD

Redheadace1...beautiful hair BTW. I happen to be bald from chemo right now, but hope to have my normal hair back soon. My red hair has long since faded, but the fair skin remains.

Having red hair, I assume you have the fair skin that goes with it, too. Did they mention anything about burning more than usual? My surgeon was the one who mentioned it when I saw him last week and I told him I was starting rads on Tuesday. He asked if I ever tanned or always burned. Well, the truth is, I never had the patience to do it slow enough so I answered that I always burned. If I got any "color" it was from a merging of my freckles. He kind of pursed his lips and said to take extra care of my skin.

Rad onc hasn't mentioned it at all. And the skin they're radiating is "virgin"... not an area that was exposed back when I did sunbathe. I'm going to be extra careful about my axilla.

Anonymous

I'm light brunette and very fair skinned - but every dr. I've seen said "oh you will be fine"  I think they just didn't want to freak me out - ha!  I'm going to start putting on the cream tonight- a couple of days before treatment - maybe it will help.

I bought those exact sports bras too Betsy- so comfortable.

Redheadace1- hope you get over your cold quickly. I won't think it would interfere with tx.

NancyD ~ Have you heard of Folicure (sp?)- the ones that come in small glass tubes. I used it years back and I thought it helped my hair come in faster. I mixed it with a little water to tone down the strength and used a cotton ball to apply to my scalp.

NancyD

Rose, this is my second "balding". I had neoadjuvant chemo and then a two month break when I had my surgery. I had a good growth of hair (3/4") when I started my adjuvant chemo on 8/2, so I expect to start seeing little bits coming back in about two-three weeks.

The head hair doesn't bother me as much as losing my eyebrows did. I can slap a wig on and look pretty presentable, but when I lost my eyebrows for two weeks in July, I felt like a Martian. It's funny, but they came out long after the chemo break had started. I'm hoping they don't do it again, but hair growth is cyclical and that's why it happens at odd times.

Anonymous

You have more strength than me - I swore I would never do chemo again. The eyelashes come in fast- Isn't it about 3/4 weeks?  I know exactly what you mean. No one realizes how our eyelashes frame our face.

mzmiller99

Since I had three rads tx in August and the rest in Sept., I'd like to join you ladies.



Is anyone else doing IMRT?



Is anyone else living in the great Northeast?

Susan

LorenaB

Susan, I am in Massachusetts, about 20 miles west of Boston.  How about you?

I have to add, I've been very lucky to have my treatments at a local hospital about 4 miles from home, and pretty much on the route to work for me.  If I had to go all the way into the city every day (I had my chemo at Dana Farber) I think I would be more tired. 

Lauren

NancyD

Hi Susan,

I'm just outside NYC. I work in the city, so I'm having my rads there...it's easier than trying to come into the city during non-rush hours as I take public transportation and the express service stops just about when the local radiation clinic opens...and vice versa in the evening.

I had a bilat mx so the IMRT wouldn't be for me. 

princessS

To all of us starting tomorrow-it's T minus 1 day!  I don't know if my "X" stickers can hang in there for 2 more showers, but they have to.  I've had these on for almost 2 weeks now.  Does anyone know about shaving the armpit before and during treatments? 

NancyD

If you do shave, it must be with an electric shaver...no blades that might mico nick the skin. But, personally, I would leave it alone. From what I hear, the rads kill off the hair follicles anyway.

bcs75

Princess, I am on my 21st out of 30 radiations tomorrow, and the hair hasn't come back after chemo. I am quite sure they don't want any shaving as it might irritate the skin. Nancy, I finished chemo on july 16th and started to lose my eyebrows and lashes about 2 weeks ago. I know what you mean about easier to put a wig on than to draw eybrows..... aghhhhhhhhhhh , but this is almost over and our hair will return. I only have about an inch on my head, most of that inch I hadn't lost, so it seems slow growing to me. I have had no problems with the radiation other than tx #19 I was a little pink under the arm. I am using the pure aloe most of the time, but other than that just cornstarch as they don't want any deodorant or powder used during radiation . Good luck to all beginning in Sept, it really does go by fast.

redheadace1

Hi Nancy. Thanks for the compliment. I love being a redhead. The doc didn't say anything about my burning more easily, and I think I read somewhere that skin tone isn't what determines your response to radiation, anyway. I'm not sure what does. Princess, yep, tomorrow's the day. Good luck! I've been trying to get ahold of the Rad dept. to see if it makes a diff that I have this cold. Hmmm...guess we'll find out.

LorenaB

Yup, I'm having the bolus every other day as well.

I was told no shaving during radiation.  The lower half of my armpit (where the rads are hitting) has no hair at all, but the upper half has been growing.  I've been avoiding sleeveless tops for the past three weeks!

tchmuzik

Me too - I'm having the bolus every other day - the techs have pretty much told me that I will burn since the doc has asked for this - apparently he wants this to happen - I'm not sure.   I have not been using any deodorant on the treated side - so far so good - as for shaving I haven't had the nerve - even using an electric razor - the treated side - under my arm - is still so swollen from surgery that I don't dare go there.     Will just have to be hairy on one side - no big deal.    There really isn't that much hair growing anyway.

I, too have hair growing back now on my head - about an inch all over - so happy to see it.   I'm with some of you -  didn't mind the hair falling out so much but when the eye brows and eye lashes went I LOOKED sick - ya know?    Couldn't hide it then.    My eyelashes and eye brows were the first to come back and I was soooooo excited.

Right now I'm wearing a cotton sports bra that has pockets - not wearing a prothesis but am wearing a form with some weight in it - the lady that fitted me for this said I should wait on the prothesis until after radiation and also not to get any bras yet - other than a sports bra.   My onc is using markers - not tatoos and the ink comes off on your bra and it WON'T come out.    This bra will just be my radiation bra and after its over will just toss it.

 Plan to see a plastic surgeon in the next few weeks to discuss what my options are.    With having the mastectomy - then radiation - I think my options are limited.    Have considered the DIEP flap or the TRAMS flap but since I have had surgery in the abdomen area TWICE I'm afraid they may not consider taking skin from my stomach.    There's some kind of plastic surgery that goes in from the back - can't think of the name now - latisimas dorsi or something like that (excuse the spelling).   Does anyone know anything about that?     Do know that I DEFINATELY want plastic surgery and was told that I would probably have to wait about 6 months following radiation to have the surgery - anybody else heard that???

Good luck everybody - keep us posted!!!      

Stephanie

vhqh

I'm getting the bolus every day, tomorrow will be day 8 for me.  I am not doing reconstruction but I know that they demand you wait a minimum of 6 months and some say as long as a year to do it. 

LorenaB

Stephanie, I'm planning on having the DIEP reconstruction and I was told that I should wait 6 months after finishing radiation (although I have spoken to someone who convinced her ps to do it sooner).  I'm going to meet with my ps in December so she can take a look at my skin, but I don't anticipate having the surgery until late March or April.  Looking on the bright side, that's 6  months to get my energy back and strengthen those abs....

princessS

Thanks for the info on shaving.  I didn't go thru chemo so I was just wondering about the shaving factor.  I teach a fitness class and we put our arms above our heads a lot so this may be a problem as I wear tank tops. So no shaving, no losing weight, no sex due to the risk of getting pregnant, are there any other do's or don'ts I should know?

sunnygirl

I finished radiation a few weeks ago -- but thought my experience might help one of you.  I really didn't want to get the tattoos, so I had the techs use body henna to make long-lasting marks.  I bought the tube of henna for $3 from an Indian grocery store (they use it for elaborate body art for Indian weddings). After several applications, the side mark stayed for many weeks (you can still see it faintly), and the one in the center of my chest had to be reapplied more often, but that only took 30 seconds each time they did it.  It stays on in the shower as long as you don't rub the skin hard.  Maybe this might be helpful for someone like me who really didn't want the tattoos...

TexanCupig

Hi y'all!  Well, my youngest brother and I will be flying to Anchorage so I can start getting radiation treatments sometime the week after next?  I WISH I could drive to my appts?!?   Just reading what y'all have been thru...It kind of scares me now, but I know it's something I have to do!

I know I'll be having radiation treatments for six weeks, Monday thru Friday, and that's about all I know for now!

But I'm glad this thread was started, and I know what to expect?!?  

NancyD

Stephanie, I think you're referring to what is commonly called the Lat Flap. Yes, they take a piece of back muscle and fat, and tunnel it through to your front breast area. That gives them a piece of well-nourished muscle to build your new breast. It can leave a significant scar on your back, but many women don't mind since it is usually covered by clothing. They also have a process caled the SGAP that uses the fat from your buttocks.

Any surgery to the radiated area is usually put off for a minimum of six months to let the skin and underlying muscle heal. You run a greater risk of infection and necrosis if you have it done too soon. I plan to consult a PS sometime in January, but probably won't have surgery until summer 2009 if my work schedule runs about the same as this past year.

Sunnygirl, I wish I had thought of the henna! My tatts aren't large...mere dots, but having them fade away would have been perfect.

PrincessS...no deodorant or anti-perspirant. I think the rads rooms must get pretty ripe, LOL. Also, no supplements that are anti-oxidants. They want the free radicals to be there for this--it's part of the process of disrupting the cancer cell growth.

Sharon, I wish you lived closer to your treatments. Are you flying everyday?!! Or staying somewhere close while undergoing the treatments? If you're going to be away from home, take a "comfy" to make wherever you stay feel more homey. For me, it would have to be a soft, squishy pillow to sleep with.

Well, my first one is this afternoon. I'll post again later whwen I get home. 

redheadace1

Hey, Nancy and Princess, how'd it go? I had my first one today, with the tattooing. It was more intense emotionally than I expected; I'm not sure why. And, maybe I'm imagining things, but my breast already feels warm, after just one treatment. That makes me a little nervous, because I still have 32 or so to go! Nurses gave me Biafine cream. Anybody else using that?

NancyD

Well, except for having to stay in a slightly awkward position that hit some sensitive pressure points while they took xrays and lined up the tattoos with the lasers...and then marked my chest up with a permanent marker, it wasn't so bad. I had two very nice Hispanic female technicians, and they had some great music playing. I forgot to ask who it was, but it had my toes moving.

It's too warm here to tell if my skin is any warmer from the treatment. I'm sweating and feel hot in general. But I got instructions on applying the Calendula ointment...twice a day (morning and evening, at least two hours before treatment), and they said to be generous with it. And to put extra on the areas where skin overlaps or can touch other skin, like my underarms or the crook of my neck. The NP said they see more irritation there than in other areas. They'll give me more tubes as I need it.

One down...

enjoylife

I too will be starting Rad not sure if I am niave or not but I am not dreading it like my chemo this has been the best place to be since I started chemo in May done now 6 treatments and I am still going through the side effects of my last one last week, its been a lonely road but all you ladies need credit helping me through this I am single with sons and they just dont have the affection and emotions women have as a daughter I would guess would but they have made it with me and when I did cry they would say I am out of here or can I go to the store for you ha... I am sorry that Binnie stopped visiting us because personally she was allot of help to me but hopefully some day she will come back to give someone else all her knowledge. Thank you ladies and I dont find this site negative at all if I do see something I don't want to read I just pass over it and move on and lets face it ladies most people who dont know much about BC are negative not us we know we have been given that special chance... If anyone has any thing to tell me about RAD I am all eyes and ears I will have Herceptin until next May but not the side effects of chemo but I have learned allot from the site on how to deal with the side effects and I am posting it on my ONG bulletin board for hints for other people. Not sure if anyone had a problem with drinking and eating a few days after but Cloraspective spray helped me numb my tong and mouth and it helped me eat and orange juice was the only thing that had a good taste if that helps anyone. I am going through the crying part now too I guess the chemo is over and I got the cry baby blues from it just knowing I did it with a few friends and my family at a distance they live away ecept my boys so I am having a pity party and when the flood gates shut I will stop my balling but right now its what I need I read somewhere else that this is norm what ever norm is ha thank you ladies again for being there and I will continue to be here and listen to all of you and pray for all of us ..

Maura

sueper13

I start tomorrow!  Got steroid cream, told to apply after treatment, then again at bedtime.  No prohibition of deodorant. Okay to use aloe vera.  Looking forward to being finished!  Tx at 11:15 tomorrow and Thursday, then at 9:45 until I am done......

Stay strong!

Sue

P.S. Nancy, how may rads for you?  You are one day ahead of me...(28 rads for me)....my rad onc hasn't said a word about lymphedema..what should I be doing?  Am already doing ROM stuff as I am walking in the mornings, and light (3 lb.) weight work...